On Monday, January 18, we went to see my rheumatologist who prescribed me Plaquenil (200mg). I’m supposed to alternate the dosage—2 pills one day, 1 pill the next day, repeat. One month supply costs ¥19,380 or roughly $200. Yikes. At my next appointment I will need to verify with my rheumatologist whether he can prescribe me the generic version (Hydroxychloroquine). If not, my American doctor will provide me a prescription so that I can purchase a mail-order for the generic brand from an online pharmacy in the U.S.
So… I started with two pills on Tuesday, January 19. What I did notice on Day 2 (Wednesday) was that in the morning, I felt a little bit better. It’s hard to tell though because the barometric pressure was also 1017 hPA for the second day in a row, so that may have attributed to an improvement on pain levels. Since about mid-December, my entire left leg and hips have been hurting, making it hard for me to walk and stand up from a seated position. Sometimes I’m laying in bed trying to get comfortable and my left knee pops as I’m straightening it out and it’s so painful and sudden that I actually cry/curse out loud. Also, my right middle finger has been stiff and swollen for over a month, and my upper right back makes it so that it’s painful for me to raise or fully extend my right arm.
Dr. Matsueda said it can take two to four weeks for me to start seeing results. He had warned me that if I get a rash in the first 1-2 days, I should immediately stop the medication. Also, if I am having any trouble with my vision, I should immediately stop.
That morning when I first took Plaquenil, I had just finished eating my breakfast and Miyu was getting dressed for school. I asked her to pray that this medicine will make me better. I was a bit surprised when she took my request quite literally because a few moments later, she was kneeling in front of our shrine arrow. If I remember correctly, I think she prayed first in English and then in Japanese, LOL. My daughter is so kind and sweet, and I am ever grateful. 🥰
A few other things I’ve learned recently are:
- I have the worst reaction (severe pain for days) when I ingest anything containing dairy and any milk derivatives
- I can tolerate a few slices of bread per week with very mild pain
- I can drink my favorite hot white chocolate mocha with almond milk and no whip cream from Starbucks without any adverse reaction (I might ache in my fingers and wrists for a few hours from the sugar but it goes away after about a day)
- My energy levels drop significantly in the evening, which incites pain
- I get headaches before my period and I’ve found that drinking one or two cups of coffee really helps, probably due to the higher caffeine content. I drink pure (Japanese) green tea regularly, which has caffeine in it, but I guess it’s not enough to prevent/deal with my monthly headaches.
Some things I’ve started to implement in order to help manage my pain better:
- Take regular Epsom salt baths. The first time I think the water was too hot and when I got out, I was really dizzy and lightheaded. Otherwise, I’ve found them to be relaxing and it does help a little bit. I can only stand to be in there for 20 minutes at a time though. For some reason I get anxiety if I stay too long. Like I’m being lazy or too indulgent. Plus, my fingers get pruny, it becomes stifling in the shower room, and I have to constantly rewet my face. The latter is what prevents me from enjoying my Kindle Oasis in the bath tub. Maybe I’m just not really one of those luxuriant bath-taker types? LOL
- I bought a hand warmer which works so well whenever my fingers turn cold. Sometimes I’m just at my desk as I’m doing now and out of nowhere, a few of my fingers will start to feel ice cold and numb. It’s as if I had stuck them in the freezer for a few minutes. Really bizarre.
- Drinking tea with and in between meals (rotating between: Green, Burdock, Ginger, Chamomile, Mugwort, and Artemisia Annua)
- I take naps whenever I can
Apparently pulmonary hypertension is a big cause of death for MCTD patients, and I can totally see why. Sometimes I’m just walking around the house doing chores and I notice my chest starting to ache and my heart beating fast—almost painfully. For those moments, I make sure to sit down and rest. Sigh. I think I’m finally getting to that point where I’m accepting my body’s limitations and making peace with that. I’m thankful that I’ve now started my medication, at least, and am finally on the road to recovery. The path may not be an easy one, but it’s a path nevertheless and as always, I’m looking ever forward.
After getting poor sleep Sunday night, I promised myself that I would go to bed early yesterday. Fell asleep pretty fast and when I woke up, I didn’t feel too groggy. Pain level was slightly improved, but my left toes are still swollen, still can’t fully utilize my right elbow, and both wrists feel crabby.